Wednesday, July 28, 2010

A Hike to Remember

Yesterday was Grouchy and Addie date day. They played golf. Addie won. Grouchy's score playing 9 holes was 44. Addie drove the cart, so her score was zero. Lowest score always wins in golf!! Addie is proudly waving the score card around today!!!

Today was Ainslee and Mommy date day. We drove to Big Mountain in Whitefish, Montana and rode the ski lift to the hightest point and hiked the 4 mile trail downhill. It went like this:
Mile 1:
Mom, are you serious we are going to walk all the way down?
Yes, Ainslee.
Mom, I am scared.
Of what, Ainslee?
Bears.
Ainslee, you have the bear bell.....(and she shakes it violently for a few minutes)
Mom, I don't like the bear bell.
Ainslee, do you like bears better?
Mom, that's not funny.
I think it is.
Mom, how much farther??

Mile 2:
Mom, can I have a snack?
Sure, Ainslee, if you can walk and eat. We have to hurry to pick up Dad to take him for a massage for his back issues (more on Grouchy's first massage later...he he he!!!)
Mom, do you have water?
Yes, Sweetie, here it is.
Mom, I gotta pee.
Okay, Ains, let it rip!!
Mom, NOT HERE!!! Let's get around that bend in the trail.......okay, here (in the straightest part of the trail, mind you)
Thanks, Mom.
Sure, Ainslee!
Mom, are we close to the end.
Nope, Ainslee, only on mile two.

Mile 3:
Mom, I'm scared!
Of what?
Look over to the side. It's a cliff, and I am afraid to fall off.
Ainslee, stay on the trail and look ahead, not down. (keep in mind she isn't graceful on the trail, has already fallen three times and can do great AS LONG AS SHE IS HOLDING MY HAND!!! Narrow trail, cliff on one side....)
Mom, I am really scared (begins to sob)
Ainslee, I am really sure you will be fine. Look, I will hold your hand and fall, I mean, walk on the side with the huge drop off, OKAY???
Mom, I am still scared. Do you have any water? How much farther? My legs hurt. My ankle hurts. Are we there yet?
Ainslee, we are not there, keep walking, I do have water but for later, and I PRAY we are almost 2 miles in with 2 miles to go.
MOOOOM, why are we going so far?
Ainslee, do you think there is an option of going straight down?
No, Mom, but why can't they move some of these rocks out of the trail.
Because it's a trail, Ainslee. Look, keep a good attitude, smile, stop whining, and let's make this a fun experience.
Mom, I never want to hike again.
Fine, Ainslee, so it is even more important to make this a memorable experience since it is our only one ever......

Mile 4:
Oh shoot, Ainslee, we have like 5 minutes to go this last mile and drive home to get Daddy to his theraputic massage!!!!
Okay, Mom, but my legs are tired and hurting, but let's run!!
Okay, Ainslee, let's run together!!!
(So we take off jogging, holding hands, going on a pretty steep downhill, but amazingly MUCH more graceful than our walking was!!!)
Mom, you have more water?
Yep.
Can I have some?
Not til the bottom.
MOOOOOM, why??
Because. Ainslee, how bout we re-nickname you Bear Scat (that's bear poop to Montanans apparently)
NO, MOM!!! I hate all the nicknames you and Dad have ever given me!!
Okay.
Mom, how much more?
50 miles or so....let's watch for signs.
Look, Mom, a waterfall.
Great, keep running!
Look, Mom, a flower we haven't seen!
Nice, not keep running as you look at it but DON'T FALL OFF THE CLIFF!!!
Mom, can we stop to rest.
No.
MOM!!!!
Hey Ainslee, how bout we call you Mountain Goat??? You are really nimble at a run, just not a walk. Whatcha think???
Wow, Mom, I like that. (She then begins running with an extra spring in her step, hopping roots and rocks along the way.)
Ains, see how wonderful things are when you have a great attitude?
Yes Ma'am. I am glad we came. Thank you for bringing me. But next time, can we buy lift tickets for both up AND down the mountain????
NO!!!! Next time we will hike up AND down!!

Oh, and our surgeon friend who has put us up in the guest house by their house for a month recommended for Grouchy to have a therapeutic massage to try to ease pain in his side that she thinks is caused by his back. We went....I WAS SHOCKED and very encouraged!!! It was almost a two hour deal, and it was very inexpensive, and he said it was not bad, but not something he enjoyed overall. It was deep tissue massage..OUCH!!!! I walked into the office when it was over and met the lady who worked on him, and she started asking him how he felt afterward. He said, "fine." and that was it!!!! The end.

Godspeed,
CL

Tuesday, July 27, 2010

READY......SET......MOOOOOOVE!!!

Looks like our financing is working out to close on our house and guest house in Idaho in August or September. Lots of lookers at our home in Louisiana that's on the market, but most people need to sell a house first. We planned to sell our home in LA before buying in Idaho, but the place in Idaho was ideal for our household......one level, 4 bedrooms, new house, and then a 2 bedroom guest house in the very nice barn.....SCORE!! Price kept dropping, we went to see it and loved it and the small town nearby. Airfare is cheap, relatively speaking, into Boise, about 45 minutes away, so after a month of thinking and praying and then coming to Montana to cool off, we took the leap.

We are still well aware that things can change and mess it all up, but tonight I go to bed with prayers of thanksgiving for the blessing of the day's great news!!!

Also, I would like to share a quick GOD MOMENT with you!! We have a very dear friend from our church in LA named Bert. We absolutely LOVE Bert and his wife, Tricia. It was recently discovered that Bert had a brain tumor that has likely been growing 15 years....YIKES!! I will not share age, but Bert has adult kids......So the tumor was removed last week, but the surgeon informed them that he had to leave a piece behind and that radiation could likely reduce it to nothing. Well, this week, scans revealed the tumor is ALL GONE!! Bert and Tricia told the surgeon that they had lots of friends and family praying, and his response was, "Tell them to keep praying. It is working!." Ain't that grand!!!! God is all powerful, very mysterious, and plain confusing to me sometimes, but I thought it worthy to offer this as hope to you tonight!!!

Godspeed,
CL

P.S. Only three more days here in Montana. I will really miss this place!!!! Have to come back soon!!

My very silly girlies.


YIKES!!!!
Girls, let's try again:






Better!!! These were taken of the girls with Ainslee's new wolf at the lodge in East Glacier Park, Montana.
Godspeed,
CL




Saturday, July 24, 2010

Photos, Finally....

Garrett is holding the Thomas train from his birthday cake in this shot. I love it because just by accident, he is holding it so it appears to be ON the track as his birthday train is approaching!!! How cool is that??
One of the gifts we found in a neat toy store here in Whitefish, MT, is this music box. It has a king and queen who go in a circle on top and also spin while the music plays. He LOVES this one!! This is the first year I shopped for things and found things I KNEW he would like. Look how happy he is!!!


Oops....I kind of missed the candles when they were lit, but he is still blowing at least!!! Happy 5th birthday!!

Outside on the night before his birthday, before his little "party," he contemplates.....something.....



Then he snaps out of it and starts harrassing the photographer.




We have been so busy and having so much fun here that I have not taken time to download many recent photos from this trip, so here they are, finally!!!
Yes, these are all of our Garrett on his party night and on his birthday train ride day.
I will need to create a couple more blogs to share some other photos....
Godspeed,
CL










Welcome Home Ainslee!!!!

My big girl Ainslee, 7 years old, just completed her first year of YMCA summer camp yesterday. I picked her up just after noon, and she was the most ratty-looking, droopy-eyelids, excited little girl!!! She ran up to me as soon as I parked and gave me a huge hug. Then she looked up to me and handed me something. She said," Mom, this is a half of my Tootsie Roll that I saved just FOR YOU!!!" She proudly pushed it into my palm and then ran off to begin hugging her friends goodbye. I have to admit a few tears pooled in my eyes as I watched her. I was getting rather emotional and thankful for my sunglasses hiding my mushiness until I unwrapped the Tootsie Roll and took the first three chews. Sand. Grit. Crispy, crunchy Tootsie Roll?!?!?!?! Yep, my sweet angel must have been saving that for me ALL WEEK throughout her swimming, archery, campfires, hiking, games, skits, devotionals...it survived the whole week with my little busy child and then accumulated little bits of sediment and grime that were now being chewed in MY MOUTH!!! There was nowhere to spit it out, no way to not be obvious, so I finished it. I did not lose any teeth. I tried to wipe the sand out of my mouth. Ainslee is so sweet!!!

My next post might be about having pinworms.........

Godspeed,
CL

Thursday, July 22, 2010

Hiking In Snow In Sandals..........WHAT??!!??!!

Today we left Garrett with a sitter and took Addie, Uncle Troy, Aunt Jen and cousins Sarah and Chris with us to Glacier National Park........no words can describe this place. It's huge, vast, rough, pretty, isolated, wild, and on and on and on.

We drove west from Whitefish over to West Glacier where we saw the parking point for our rafting trip we have planned for Monday. We paid our $25 to enter the park and then began the ascent to Logan Pass by way of Going To The Sun Road. It was breathtaking!! I had traveled this route before back in 1996 with my Nationall FFA Officer Team, but it was still every bit as amazing this time. We found parking at Logan Pass, at about 9,600 feet elevation, and headed up this boardwalk on the Hidden Lake Observation Trail. It was about 50 degrees and breezy. We began the trail and then noticed a herd of huge bighorn sheep. We would sometimes have to cross packed snow that was still piled on the path. Then the path ended up being this uphill climb of all very icy snowpack. It was very difficult to traverse!! Addie was a champ as she was in a grumpy mood which gave her lots of energy. We made it about 2/3 of the 1.5 miles up and decided, as the rain began to fall, to turn back. Addie was done, we had each fallen in the snow at least once, and to top it off, I had on my Keen sandals and everyone else wore shorts!!!!
On the way back to the car we got tickled at the fact these Cajuns were here in our beach clothes hiking in the snow!!!

On the drive back down, we saw some beautiful mountain goats with their babies, a cool bridge and many beautiful waterfalls.

Yes, I took tons of photos, but I am charging my camera batteries and my own batteries and going to sleep!!!!

Thanks for catching up with us!! I will pick Ainslee up from YMCA camp in Elliston, Montana, tomorrow. She will be completely surprised to come home to her cousins.....still doesn't know they are here...he he he!!!!

Godspeed!!
CL

Wednesday, July 21, 2010

Let the Fun Begin!!!

This evening Grouchy's sister, brother-in-law and two of the cousins arrive!!!! We have the guest house here in Whitefish, MT, ready and waiting!!! We have chili to cook, an air mattress in our loft for our girls, and are praying that the relatives will be comfy in the bunk room. Sure hope so as being it's the busy summer season here, the hotels, motels and cabins are pretty hard to come by. We are looking forward to having some great fun including the local water park, a day or two in Glacier Park, a trip up Big Mountain for alpine slides, gondola rides to the gorgeous peak and maybe more zip line action. Except for Uncle Troy, the crew hasn't been out here before. My sister in Law, Jennifer, loves photography, and I CAN'T WAIT for her to see this. At least we have digital cameras now......we would both go broke buying film out here!!!

Addie and Garrett are enjoying Bible School at Calvary Chapel in Whitefish. They have a high seas/pirate theme. Garrett is doing okay going with a group of kiddos and participating in some of the activities, so that's neat. Everyone there is so loving to him. He is s cute dude, buthe hasn't made a diaper for them yet......

Today Grouchy and our Montana friends' employee Mary have a big project underway. Our friends have a very rocky driveway....rocks that were brought in for the drive by the previous owner. When the snow has to be plowed all winter, the rocks get scraped all around, many ending up in the grass on the sides of the drive. Not a problem in the winter, but when it comes time for mowing the grass in the summer, PROBLEM!!!! So they are renting a mini-excavator and digging a trench where they can place landscaping timbers to make a mini retaining wall to hold the driveway rocks in. We will see what happens! More redneck fun!!!

We are on the downhill side of our month here. It has been really nice so far. No one complains of the heat....there is just enough to get hot, but not suffer. Then at night or right now in the morning, there's a perfectly delightful chill in the air. So nice!!! We pray Idaho offers similar relief in climate for the kiddos. Only problem we are having is that it is daylight so many hours that we stay up waaaaaaay too late every night. It's near impossible to get motivated to get to bed when the windows bear light. It's even harder to get the kids thinking about bed!!! But it's not all bad!!!

Have a blessed day, and thanks for dropping by!!! Garrett is here in my bed beside me this morning, playing a game on his Nintendo DSi so he doesn't wake Addie yet. Soon the golf cart derby will begin for the day!!!

Oh, and Ainslee, at YMCA camp this week. Haven't heard one word from her!!!! That means good things!!!

Godspeed,
CL

Sunday, July 18, 2010

HAPPY BIRTHDAY GARRETT!!!!!!

My big boy turned 5 today.

Last night we had our new friend, Mary, over to have Thomas cake and watch Garrett open his presents. My parents gave him two games for his Nintendo DSi, and he also go some neat toys that make cool patterns and spin, along with a very, very soft, flat, but stuffed monkey to sleep on in his bed, and some great clothes from Grouchy's parents. Oh, we also got him a really wild remote control car that has light up wheels and spins and flips....he loved that also. He was so cute opening each gift. I must have snapped a hundred photos of just that!! Each one was commented on as he was trying to open it. There were grunts, squeals, sometimes just spastic excitement, and finally, with help from Addie and Ainslee, as each gift was unveiled, his excitement was plain breathtaking. We all laughed and smiled and enjoyed it so much!! He stayed up a while and played with his new loot until we had to get everyone to bed so we could rise early this morning for the BIRTHDAY TRAIN RIDE!!!!

We took the Amtrak train from Whitefish, MT, about 2 hours over to East Glacier Park, MT. We left this morning at about 7:30. The train was very late, but we still made it to East Glacier by noon. The views were spectacular. We even saw some black bears by the river, fishing!!! Garrett loved the whole experience of the train. He got his photo made with Conductor Tom, sorry, Nina, not Conductor Bob. We enjoyed breakfast in the dining car and spent the remainder of the ride in a big booth on the lounge/observation car. We had lunch in the lodge at East Glacier and goofed off around the beautiful area. We rented a hotel room for a few hours so Garrett could nap when we realized how much time we had to kill and how few things were working for him.....long topic. Grouchy had a confrontation with a man who commented very rudely about Garrett's behavior at lunch, and rather than lay the guy out cold (like I would have done....not just grizzly bears in the park but MOMMA BEAR was there today!!), he was so collected but rightfully vocal about the man's comments. My heart broke into more pieces than it ever has before. And the man, well, let's just say it is highly unlikely he will ever make a comment about anything regarding anyone's child....EVER AGAIN. I cannot even type about the details because I will fall apart again. Let's just say thatGrouchy is in a place right now, a very difficult place, where I tip-toed into the deeper and deeper water over two years, but he has been thrown into the depth in about a week's time as he has been around Garrett and the girls me more continuously than he ever has the past couple of weeks. Today he shared with me that we will need to learn to be okay planning to leave Garrett behind more when we go on trips, travel far, etc. for our other chldren's sake as well as our own sanity. We have known this, but we have avoided the cold truth. It's hard to imagine we are here like this in this life. We want to be together, ALL of us, sharing experiences, travel, beauty, the outdoors with all of our children, not two of three. It's a hard thing to swallow.......to let go of a huge dream. Like some moms have shared and I never fully realized until now, it is to mourn the loss of something very assumed, expected.....the normal child......
Please do not think for one second that I regret having Garrett and having everything about him that makes him Garrett. In a weird, unexplainable, but very simple way, I love everything about the whole situation. In a very honest, raw, completely exposed, scary way, I hate everything about it in the same breath.

We press on, another year.....a year past that saw great improvement in his speech and cognition. A year of him venturing into the public education system, staying well, and thriving in that environment. A diagnosis and right now, the continuation of weanign him onto supplements what may slow the progression of his mitochondrial disease. A year of therapy, therapy and more play!! A year of smiles, laughs, a personality that is precious, clever and beautifully active. At one point on the train today, he got into a loud, very fast-moving, hyper mood as he does much more frequently now, and sat in the train booth with me and kissed me on the lips over and over and over and over. It could have been annoying because of the grabbing of my face, clawing of my neck and pinching all over my face, but it was truly the first time he has acted like that without me prompting him or playing a game making silly noises after each kiss to keep him kissing me. This was different. I felt him love me. I felt like I had one of God's angels in my lap covering me with His love from Heaven. I will never forget it. I wasn't expecting to RECEIVE such a gift on HIS birthday!! But I am so grateful.

While Grouchy and Garrett finished their nap, the girls and I wrapped up our shopping and photo-shooting and met him at the train station for the ride home. Garrett made friends with two grandmother-type ladies and one of their 5 year old grandsons who pulled him into their seats and engaged him in chats about his Nintendo game. Ainslee found two ladies who taught her to play several card games, Addie wrote letters and wrote in her new travel journal, and Oscar came down with migraine. The train was on time...YAY!!! We got back to Whitefish at 9 pm and rented a car so I can take Ainslee to YMCA camp in Helena, MT, tomorrow.

Ainslee has been very, very excited about this week-long resident camp, but tonight at bedtime, she fell apart crying, telling me she didn't want to be away from me for a week, okay, just 5 days, really. Until tonight she has been boasting about how she is plenty ready to be gone for a week with NO FAMILY DAY!!!! I think she is just tired and apprehensive and will be fine. We will see what tomorrow brings!!!! May be blogging tomorrow about a 6.5 round trip ride with Ainslee going BOTH WAYS...hope not!! I know she will have fun!!

If you are reading this, you are likely one of the people who has been shepharding me along this path in life, along with my Lord. I thank each of you for the hours of listening, love and kindness you have shown. This is a wild, uncertain ride, this life train, and while sometimes I want to get off, you all help me keep on going!! Thank you!!

And back to my precious Garrett. I love him more than anyone can love anything or anyone. I celebrate this spirit God created PREFECTLY in HIS image.

Happy birthday, my big boy!!! I can't wait to keep riding the train with you tomorrow.

Godspeed,
CL

Thursday, July 15, 2010

I DON'T LIKE THIS!!!!!!!! Can we do it again?????

Insanity. That's the best word to describe the way I feel things are sometimes. Insane.

Take today for example. We drove to a really awesome water park just ten minutes from the guest house where we are parked for the month (THANK YOU Nargi Family!!!!). There were 9 different, fun, colorful water slides, and Garrett decided he wanted to go on them. Keep in mind that just this past two weeks has Garrett mustered the courage to climb "all way top" of the playland in the local McDonalds here in Whitefish, Montana.....and it's a small, very small play thing. So I walk with him up these very steep concrete sidewalks to get to the top of the slides. WE ARRIVE. Then "IT" happens......the screaming, thrashing, more screaming, kicking, grasping onto me with all his might, and did I mention SCREAMING???? He is horrified, but I know this kid. Once we get going, I know he will love it....as long as I keep his head from going under water and keep him from getting splashed in the face. So there isn't a lifeguard at the top of the first, not-so-threatening slide, but Garretthas morphed into a 400 pound gorilla who is very, very unhappy about having his mommy make him slide. I pry his spider-fingers from around my nose, eyes and neck, plop down on my bottom on the top of the slide and hold onto Garrett and I start down the slide, trying to get him facing forward. And sure enough, once he gets facing forward and moving, he giggles and makes this excited sounding gasping noise he has perfected and LOVES IT. UNTIL we hit the little pool at the bottom. Once we have had our "splashdown," which did NOT get his face or head wet, he goes gorilla again screaming at the top of his lungs, "I DON'T LIKE THIS!!!!!!" But he doesn't stop there. He hits me, will not let go of me, screams more and more, and everyone stares. It gets quiet in this area of about 100 feet in diameter around us.
Then he looks back at the slide once we are on land and very, very quietly says, "Mommy, can we do that again?"

So we go up again, but this time to a longer, larger slide. When we get to our turn, he goes gorilla again, but this time there are people up there with us in line, and a life guard directing us. Garrett starts sounding like I am ripping his organs out with no pain meds and thrashing and clawing and this time even frothing at the mouth like a rabid dog, or gorilla, and I look at the young guy lifeguard and very calmly say, "He's autistic. He loves it once we get going. I promise I am not torturing him." The lifeguard nods in horror and sends us down. I get Garrett facing forward, he giggles, makes the happy gasping squeek noise over and over and has the greatest ride UNTIL we land in the little pool at the bottom. He screams about not liking it again, but then as soon as we are out, he asks to do it again!!! By the fourth time he was great, no dread or fight, but by that time he was asking me to carry him up the sidewalks to the slides. I would help him by pushing and pulling him a bit, and sometimes carried him. We must have ridden 6 times or so before we checked into the huge hot tub there. Then we had a hard time getting him out!!! I will say that a hot tub in a Montana summer is much, much more pleasant than very, very cold water slide water!!! Later Grouchy took him back up a few times until Garrett got his whole head wet, then that was over.

Grouchy took Grouchy Jr. back to the house for a nap, and my girls and I spent the rest of the afternoon at the water park. No pictures, sorry!! It was a great day!!! I am actually sunburned from "beaching my whale" on a towel in the grass, watching the back of my eyelids....did I just say that....I meant watching Addie and Ainslee slide!!

We also made a third offer on the house we are wanting in Idaho. This time without the contingency of selling our house. After being out here as a family, with Grouchy home every day with us, we are seeing more of our needs and realizing more of the limits we will be experiencing. I don't try to sound negative here, just realistic. We will be functiong as two separate units many, many days. One will be with Garrett, the other with the girls. We have to just face the facts. We cannot keep pretending it's all fine and we can all 5 do everything as a "family." We feel the house we like that has a guest house is best. We know when friends or family travel 2000 miles to come visit, it would be wonderful to have a private home to offer them, not a basement or spare room, but a home. My parents have expressed a desire to stay several months in a guest house near us out there, and that would be a huge help as well. We are also entertaining the thought of offering someone the guest house for very cheap rent during the school year in exchange with help around our place and with Garrett. Lots to consider, but first have to have the house with the guest house!! It's fun to dream and plan. And then we would also have a place for Garrett, should be need to stay near us in the future......

We are still in awe of how Addie has bloomed here. She was up and down the water slides for SIX HOURS, non stop. Now tonight she was poured into bed by Grouchy, but she was happy, and aside from Oscar carrying her up the slides a few times to help her conserve some energy for the long day, she didn't "need" help. For once in the summer outside, we didn't have to cut it all short for the sake of Addie's misery. PRAISE GOD for that!!!!

Ainslee is her beautiful, social butterfly self. She is so independent. In just a few days, she leaves for her first week of resident camp!!! WOW!! My big girl!! We are having a blast, but away from the television here and spending some wonderful time together. We see the girls having fewer spats and growing closer, like they were in the past. We all needed to slow down and focus on each other and our faith.

We enjoyed another farmer's market tonight, this time in Columbia Falls, MT. It was neat and most importantly I had BEER BATTERED, FRIED CHEESE CURDS for dinner....one of my very favorites!!!

Everyone else is asleep. I faxed in our offer on the house. Now we wait!

Rest well and remember to say your prayers, too!!!! And remember the simple truth of the way we feel at the end of some days:
I don't like this!!! Can we do it again???
Thanks again, Garrett. You teach me more every day. I love you.

Godspeed,
CL

Tuesday, July 13, 2010

Photos From Big Sky Country.





WOW, love the new camera AND our really, really cute kids!! We took the crew to the top of Big Mountain via gondola lift today and enjoyed lots of posing and playing around. Even saw Canada and some snow left over from winter.

We had lunch in Whitefish today, then had an afternoon on Big Mountain with lots of chilly photo ops and alpine slide rides. Then for our evening entertainment, we enjoyed having Grouchy join us for the second week we have made it to the Whitefish Farmer's Market. I was able to purchase some more very reasonably priced pottery.....LOVE IT!! The kids enjoyed pizza, ice cream and kettle corn, not to mention a couple of do-dads from some artists.

Wow, time flies!! The girls have decided to go to a day camp here in town tomorrow and Friday. Thursday we will leave Garrett with Mary and then trek into Glacier park for the drive on Going to the Sun Road. AMAZING!!! Saturday Ainslee leaves for her week of YMCA camp near Helena, MT. Then the BIG SURPRISE!!!! Yep, surprise is that one of Grouchy's sisters and her husband and kiddos are going to be flying up to stay for a week!!! That's next Wednesday. Our kids have NO IDEA!! HE HE HE!!! Oh, and then this Saturday is Garrett's birthday, celebrating it on a TRAIN!!!

Whew, almost 1 AM on Wednesday morning, so I should get to bed so I have energy to take more fun picture tomorrow!!!

Counting our blessings tonight. Please pray for those in this world who suffer tonight, especially my Granddaddy Horn.

Godspeed,
CL

First Good Photo!!!


Thought I would share one of my first photos made with our new camera. I made it a lower quality image on the computer so it isn't so slow to download. Enjoy!! Lots more to come....

Sunday, July 11, 2010

The "A" Word

A couple of days ago, we made a family trek to Kalispell, Montana, about 15 minutes south for some redneck shopping....you know, Marshalls, T J Maxx and Ross, and of course to one of the huge book stores for Addie. She is reading these books in a series about different types of fairies, and she is reading them whenever she has any down time, and sometimes one per day!! I love it!!!

While in the bookstore, Garrett made a huge stinky in his diaper. Funny thing is that he ALWAYS does that in bookstores. Must relax him or excite him. The jury is out on that one. Grouchy had walked to Target for some groceries, and the kiddos wanted to come with me to the book store. We found the next SEVEN books Addie needed and headed to the checkout line. There were two customers ahead of us, and while waiting, Garrett was enjoying opening and closing the hinged door of a small, glass-front Coca-Cola cooler with 20 oz bottles of product. After he opened and closed it in a very focused and loud way about ten times, the man ahead of us said,"Buddy, you're letting all the cold air out." I think he was making it known he thought it wasn't a good idea, but I just let it go and asked Garrett to close it more softly. I knew that if something like that didn't hold his attention, there was no way on earth he would not wonder off, and we would not be able to complete the transaction and buy Addie's books. So it was our turn next, and as I got our my debit card and filled out a discount card application, the cashier, a lady in her 50s, said,"Hey little guy, can you please quit doing that (opening and closing the cooler door)?" I felt my testicles jump out of my purse, scurry up my arm and land on my shoulder, and I said, without even thinking,"That's my son. His name is Garrett, and he is autistic. He can either keep opening and closing the cooler, and I can purchase the books for my daughter, OR we can stop him and he will be out the door, walking out into the parking lot so fast that I won't get my books and you won't get your money. Let's finish this, and we will be gone." The cashier, who was already kind and friendly softened a good bit and was very understanding then. Wow, I did it.

Funny thing about this is how my perspective totally shifted. For a couple of years I have been on two different online message boards comprised of parents and grandparents of kids with low muscle tone (hypotonia) and kids with mitochondrial disease. I have read many posts about how it is hard to have kids like Garrett out in public as people don't know how to take the behaviors and tantrums. And a few times I have felt the stares and assumed some negative judgment, but didn't have time to act on it. But that evening, things shifted. I went from worrying what others thought of MY PARENTING and WHY MY KID ACTED LIKE THAT to thinking about Garrett and sending to take up for him. Hey world, give my kid some slack. He can't help it!! He's happy, so let him be!!!

Then the coin flipped tonight. We went to a state park here in Whitefish on the lake. It was a great time with our new friends from the church we attended this morning. The kids swam and played in the rocky sand, we cooked out and laughed and had such a great time. At one point there was a campfire, and a new friend was talking me and said."Does your son have autism?" A few months ago, this might have brought me to tears, but it was actually a relief to hear someone kind enough to talk about it!!! I explained mitochondrial disease and how it manifests in his brain through autistic features and developmental delays. She has two kiddos and was so open and willing to listen and focus on Garrett. He loved her!!

Thought it was interesting how one night I was having to tell someone he is autistic to explain him, but then about 48 hours later, someone picked up on it. It was a good order of events: for me to have to voice it in preparation of being approached with it.....hope that makes some sort of sense!!!

Church was absolutely amazing today, and our time with our new Christian friends was remarkable!!! They all are trying to convince us to stay here instead of moving to Idaho as we have planned. Don't get me wrong, I could live here....we all could. But it's not easy to fly into for a good price, land is expensive, and it's pretty darn cold here all winter. We have been told we are smart to be here for July as it is the"summer month."

Nothing worked out with our house sale yet. We are praying for a smooth transaction to people who will enjoy our place. We have enjoyed so many blessings there!!!!

Addie and Garrett are still thriving here. Addie is just so much more full of energy. It is so encouraging to see!!!! Garrett wow-ed all the ladies at the park this evening. He is such a ham!! Once night this week, a few new girlfriends and I are planning to go back to state park on the lake and tent camp with our kiddos. There have been two black bears there in the camp this week, and one was trapped there last week. So if sometime soon I stop posting..........

Godspeed,
CL

Friday, July 9, 2010

God Did A Great Job!!!

I have to say that after this trip I have to say once again that, "God did a great job!"

We had an amazing day yesterday. We enjoyed a drive up Big Mountain here in Whitefish, MT where we ate lunch and took the ski chair lifts up the mountain away and rode this really fun, fast alpine slide. Garrett got to ride in front of me on my sled and LOVED IT!! No, there wasn't much snow anywhere!!! Grouchy then took Ainlee and Garrett back to the house and Addie and I had SO MUCH FUN doing a zipline tour. Ainslee wasn't heavy enought yet. We flew along a cable in a safety harness 300 feet above the ground doing over 50 miler per hour!!! I was afraid she might not want to do it, but she LOVED EVERY MINUTE!!!! She was all grins and giggles, and I helped pick the bugs out of her braces last night!! She had quite a time hiking uphill to some of the platforms, but I carried her gear and pushed her and pulled her and swore to her that I would carry her if I had to because I loved it and knew she would. I am so proud of her. She is so adventurous and wants to do it again!!!!!

We just learned that Grouchy's sister, her busband and two kiddos will be joining us for a week up here! How cool is that!?!?!? I just booked a white water rafting trip for all of us while they are here. Oscar is hoping to get a fishing trip organized, and there will certainly be another day on Big Mountain!!!!

Oh, forgot to mention the bit about how I once again marveled at God's work!! After Addie and I finished the zip line fun, we rode the longer chair ride to the tip top of Big Mountain, to about 10,000 feet. Wow. From there we could see into Canada, across all of Glacier Park, down through Whitefish and Kalispell and beyong. I cannot describe the views from up there!! I was in silenced awe and had to keep looking around over and over to really take it all in, and each time I would turn around and re-visit the same mountain peaks, I could still hardly believe it!! Addie even found some snow to play in and throw at me!!! We had to put on jackets up there. It was nothing shy of spectacular.

God knew what he was doing. Just you try to prove otherwise. I just need to remember that about all of the things in my life. God's creation is awesome!!!!

Godspeed, and if you need inspiration, look up photographs for Glacier National Park....you'll get it!!!

CL

Wednesday, July 7, 2010

Grouchy Made from Alaska to Montana

We were all smiles and laughs with excitement of picking up Grouchy at the tiny airport between Whitefish and Kalispell today at noon. Addie took a big leap right into his strong arms, and Ainslee would have beat her to it, but her seatbelt was stuck, as usual!!!

We came to our guest house and enjoyed a family sit-down lunch....and we have re-committed to doing these meals as the usual, again......We know it's best for all of us!! After Garrett and Grouchy took naps while the girls and I ran errands and shoppped, we all went to the pool in town again. The girls, Grouchy and I LOVE the indoor water slide there. It is super-fast!! Garrett likes the kid pool that is all 3 feet or less with fountains and those cone-shape water-dumping buckets. He also likes the hot tub and is JUST old enough to use it!!!! Plus it's all indoors!!

We came home for another nice, relaxed meal together, then took a long walk.....well, not miles and miles, but considering for the past year we haven't taken a family walk at all, 3/4 a mile was LONG!!! Garrett pushed his stroller, Ainslee rode a motor bike back and forth, and ADDIE WALKED with NO COMPLAINTS!!! I could see her legs wobbling, and once we got each other laughing so hard she fell into a pretzel on the dirt road and I had to help her up....it was cute!!

Of course Garrett conned Grouchy into many, many rounds of Garrett driving the golf cart, or "go-cart" as he calls it!!! Grouchy loved that!!! We saw the same doe we saw last night. She is so large and so beautiful. We also enjoyed another beautiful sunset with the setting sun turning the mountains east of here a beautiful pink color every evening. So beautiful. NEED MY NEW CAMERA TO GET HERE!! The case came in today.....hopefully camera will be tomorrow!!

Everyone got in bed earlier than usual, so maybe we will all get rested up completely. Praying I don't have to get back to my exorcism gig again tonight!!!! Thanks to the many of you from the mito board who have given me confidence that the demon possessions are likely night terrors. We have never seen any of our kids deal with this before, and you all are right: it's scary!!!! I did only give two doses of his supplements and may move everything an hour earlier in his day, starting at 7 am and then 11am, then last one at 3 pm so he gets the meds earlier. I have heard from a few of you how the Carnitor can affect sleep some. Oh, and the smell of his poop has changed into total weirdness since two days after starting Carnitor. And the urine smells off, too. Thanks for the heads up!!!!

Got an offer on our house in Louisiana today. Tomorrow we should be working on a counter. It's always interesting!!!!

Hope you took time to thank God for the miracles in your life today!!!

Godspeed,
Clara-Leigh

Exorcism #2

It just happened again. Garrett had been sleeping in his pack-n-play for about two hours, the girls were asleep, and he woke in a panic again. This time, I went into his room and he was on his knees in the pack-n-play screaming for me. But when I got there he kept screaming in this horrible, scared tone for me, but I WAS THERE. I kept telling him I was there and when I would ask if he wanted me to pick him up, he would scream "NO, NO, MOMMY!!! Mommy!!" This time I swept him up into my arms and held him and told him to wake up. He kept panicing, fighting me, not wanting to be in my arms. I took him upstairs to my bed where I had a lamp on. I sat him on the bed and he kept going on and on asking for me, but then he wouldn't make eye contact, and if I touched him, he pushed me away or would swing an arm at me...ouch.

He calmed down in about 5 minutes and began to grind his teeth and breathe loudly. Now he is asleep in my bed, beside me very peacefully. I am thinking the teeth grinding is "thank you" in his language...maybe???

SO this is two out of the past three nights. I might have thought it was reflux, but I put him back on Prevacid last week as he was having some more burps than usual. So that's not it. I thought it might be dreams, but I think if it was a dream, I could wake him up and he could make some sense..... Could it be the Carnitor I added as instructed beginning last Friday? I haven't heard of this type thing as a side effect, but I will post on the mitochondrial board on Parent 2 Parent to ask tonight.

The day was great here. Nice weather!!! We started the day by having Garrett's blood drawn for an IgG test, or immune system function test at the local hospital's lab. It was botched or not done when we were in Houston, so Dr. K's nurse emailed to ask me to have it done. Next, we went to the park in Whitefish. Kids had a ball. After the park, each of the girls took a half hour piano lesson at the North Valley Music School. Then we had McDonalds for lunch, followed by about a three hour play time in two of the three pools at the fitness center we joined for the month. The girls made friends with some neat kids from Canada who are here with their families on vacation. I enjoyed talking to one set of parents. REALLY nice folks.....Yah!!! It was interesting to hear them talk to me about their healthcare system. These families think it's the greatest because they don't have to pay for anything, and it has benefitted them. They pity us because we have to pay insurance costs. While this is good to hear, I know too many parents online with horror stories about their kiddos and the Canadian system. So confusing. Depends on the situation.

From there we planned to head to Big Mountain to do the alpine slide and look around, but the farmer's market that opens from 5-7:30 pm Tuesdays was cranking up, so we went there instead. The girls flitted around, made jewelry, etc. I ejoyed some green chicken curry.....ga swas later...I followed Garrett who I was CERTAIN was going to ride in the stroller but not push it, or ELSE.....and OR ELSE was me realizing that for us to spend ANY time at the market, he had to be pushing the darn stroller. Again, I have to do a better job knowing how things are and realizing that following him and protecting others' shins from his stroller wrath when he is too focused on watching the wheels go around to watch where he is going is fine. It's fine, really. It has to be. Next was home for pizza, corn, cantoloupe and BED!!! The girls and I finished watching the movie "Holes."

Garrett is peaceful. Grouchy arrives tomorrow. I must remember to wear a bra when riding the gold cart with Garrett. Life is good.

Had a long talk with Ainslee about her relationship with Garrett today. She is very impatient...have NO IDEA where that came from. She can be Garrett's best playmate and big sis and advocate, but then lately, especially, he tends to do things to aggravate her, and she will swat at his hand, yell at him or do that nauseatingly ugly sound of whining she has perfected. Sends me over the edge!!! When we got back to our little house here in MT, I sat her down and once again reminded her how Garrett isn't like other kids his age. I somehow, quite eloquently shared that she is his big sister because God chose them to be in the same family. I explained again how he is learning from her. He learns patience and hitting and positiveness and negativity from us all the time. I tried to get her to buy into the team concept.....that Garrett is on our team and that her patience is crucial in him learning how to behave most appropriately. I think she got some of it. And I think that thinking it, but also saying it and hearing myself say it helped me also. It felt better afterward.

Oh, Garrett's b'day is a week from Saturday!!! Today, I bought tickets for all 5 of us to take the Amtrak train from Whitefish, about two miles away, through Glacier National Park, getting off at East Glacier, then coming back to Whitefish the same night....ON HIS BIRTHDAY!! Garrett LOVES trains and has ridden only one regular train, a real one, with my parents, and that train looked like THOMAS!!! He has worn out all the local trains at fairs, zoos, etc. This won't have the Thomas garb on, but it will be a great time. In East Glacier there is carpet golf, a lodge with pool, horseback riding......and most importantly, we will take the stroller so there is something Garrett can push to keep him occupied. The trip should be gorgeous, and we will even eat two meals on the train....fun!!!! Couldn't think of a better way for him to spend his birthday than to be ON A TRAIN!!!! He loved watching the trains come and go while we were at the station buying the tickets today!!

Love to each of you. Thank you for taking interest in our little piece of normal!!!!
Godspeed from Montana,
CL

Tuesday, July 6, 2010

Photo: Intellectual Garrett


I had to prove to myself that I CAN upload photos here, especially with my new camera and lens being shipped as I type.....YAY!!!! Here's my little man on free dress usually has to wear school uniform of navy shirt and kahki pants/shorts) and photo day at school this past spring. He looks so serious. My little fraternity dude!!! Hope you enjoy this shot as I do! Look for many, many more once I get the hang of this blog better!!
Godspeed,
CL

Exorcism.....seriously!

At 12:45 Monday morning, Garrett woke me with the most horrifying screaming I have EVER heard him make, and most of you know we get lots of screams from this little guy. I tripped down the stairs of our friends' guest house here in Montana and found him in his pack-n-play on his knees going completely wild. He was screaming, calling for me, slamming his hands and face onto the bottom of the pack-n-play. I told him I was right there, and I asked him what was wrong. Usually he will not tell me what is wrong, but occasionally he can get it together enough to say something. I asked if he hurt....more thrashing and screaming. I asked if it was his tummy...more thrashing and louder screaming. I finally helped him to his feet, held his shoulders and raised my voice to try to see if he would wake up. I thought maybe he was sleeping still, having a nightmare. He had his eyes open. He just wasn't getting better, and he was in a panic. I got him out of bed and put him on his feet, on the floor. It was at that point he actually acted like I was there and then screamed for me to pick him up. I carried him up to my bed where Addie was sleeping with me. I placed him on his back with his Thomas blanket and he grinded his teeth and breathed loudly for an hour with his eyes closed. I got up then and put him back in his pack-n-play, and he slept soundly until 7 a.m. Monday morning. He couldn't hear the fireworks that night. His noise machine was set as it always is on a medium sort of volume with rain as the sound. He had slept in the room the night before. This morning I didn't see any bites, stings, etc. He took a great nap in the same place today. It was just day three of his second mito cocktail supplement being added, so maybe something happened there???

So I think he was taken over by demons or aliens for an hour. That's really all I can think of to explain it!!
So I figure I can claim a successful exorcism...hey, I did hold him in my bed and pray really hard for that hour he was screeching his teeth in my ear!!!!!
I spent that restless hour praying for Garrett. Praying his little body will put on a few pounds, get stronger, have fun, keep laughing, smiling, living as long as most people live......prayer is good. Exorcisms don't exist without it...HA!!!!

Godspeed, and if you ever feel demon-possessed, just give me a call....I'll pray for you, too!!!!!
Clara-Leigh

Sunday, July 4, 2010

Isn't it impossible to be sick on vacation??

So since Friday evening, Addie's stomach hasn't been feeling good. No other symptoms, just tummy uncomfortable. Then we let her just lounge all day Saturday until dinnertime. This morning she was feeling a little warm and weaker, so I found a doctors' office that has noon to 3 office hours on Sundays. Mary took Ainslee with her to church, and when they returned, Mary took Garrett to lunch and I headed to the doctor with Addie only to learn that since it is a holiday, there are no doctors in today. We ended up at the small hospital's emergency room. Her blood work was great except low potassium.....dehydration. The really kind doctor sent us home to start drinking Gatorade and taking Zantac. She's snoozing now and has eaten some. Must be something she picked up on the germ tubes (airplanes) last week on our way here. Bummer.

Meanwhile, while at church, Ainslee met another BFF named Danny. She is also 7. Ainslee is now with that family going to a church gathering for dinner at a member's home, then to watch fireworks over the lake in town at 10:30 and spending the night with them. Mary has known this family for some time and goes to church with them. The husband is even from Baton Rouge!! Nice folks, and Ainslee was really missing having someone to play with while Addie has been sick.

That leaves Garrett who went to lunch with Mary, and then Mary took him to one of her friend's houses to play with her 3 year old son. They had a blast and only ended the fun because the other little boy needed a NAP!!!!

So my kiddos are having no trouble finding pals and getting into all the fun!! We hear it will be loud with fireworks all night long!! Shoot, it isn't really dark until about 10:30, so you can imagine the fireworks starting that late means they last all night!!! So my Ainslee will be having a sleepover. She is getting to be a big girl, and she was about to go nuts-o here locked up in the guest house with sick Addie!!!

Have to share that Garrett's favorite activity here is driving the golf cart. It is a battery powered golf cart that Jason and family are so kind to allow us to enjoy while they are away for the month. I sit behind him, and he sits between my legs and controls gas, brake and steering, and he does a great job!! His favorite part of our "go-cart rides" is bumping across the bumps screaming WEEEE-HA!!! Must be his version of YEE-HA!!!

Blessings to each of you this evening.

Godspeed,
Clara-Leigh

Saturday, July 3, 2010

I bit the bullet, finally!

Yesterday, Garrett started supplement #2 of 4 total for his mitochondrial cocktail. It is Carnitor, three times daily like the CoQ10.. He is pooping up a storm.....may be that or may be all the increased activity outdoors......time will tell. Two weeks of CoQ10 and Carnitor, then add Riboflavin, then Folate.....and we are all on board. Just have to keep track of it.

Okay, I did it....HEIDI, you will be very proud. I ordered what I consider a NICE camera!! Until now I have been operating just fine with my 2002 Cannon Sureshot pocket-size camera. It has been to trustworthy and simple. I have a HUGE canvas of my kiddos at the beach made from a photo from the little Cannon, but it was PEER PRESSURE, I SWEAR!!! EVERYONE around me has the big, nice, SLR digital cameras. Or at least that's what I think they are. My sisters in law, my friends Lisa, Vicki, need I say more!!?? I was feeling more behind the know than usual, and that's REALLY behind!!!

So I ordered a bundle from walmart.com, and it is the Nikon D500 with the 70-300 mm lens....and no, I have NO IDEA what that all means. I took the kiddos on an evening trip to Five Guys for dinner and then to TJ Maxx (my second home and the ONLY place I "enjoy shopping") and then to Borders bookstore. While checking out, I became horribly anxious when I saw a one inch thick manual for sale on how to use MY new camera. Jeez, hope it has an auto setting for dummies like me!!! I figure now is a great time to buy as I have time this month. I have time to enjoy the amazing beauty of the Montana landscape and the cutest three kids God ever created and get some good practice!!! A friend here has already asked me to take photos of her with her little dog...how fun!!!! It should be here by the end of the week.

I have no more time to blog. Have to get online to try to just learn how to correctly open the box in which the camera will arrive!!!

Godspeed,
CL

Thursday, July 1, 2010

It's real.

You know how as a mom you know things, you just KNOW them? I have shared with Oscar, my parents and a couple of friends that I think I am seeing Garrett struggle more physically. My close girlfriend, Kim, Barett's mom, about whom I wrote and CRIED about a week ago, even mentioned last week that she noticed Garrett struggling more than ever trying to climb into her Toyota mini van. But most friends and relatives can't see it. I can see the increased struggles my little guy is having. It's physical, and it's emotional for him. And now we are up in Montana where I do see Garrett much, much more active, but still struggling more, but he is at least feeling less confined by the extreme heat we had in LA. Dr. K, the mito specialist we see in Houston, said in her notes that he has a "waddling gait." I certainly see that. I also see he isn't running much either. He asks me to carry him more. He tells me now, "I tired!" But he doesn't want to nap...he wants to just stop a minute or be picked up and carried. Today he limped a good bit all day and showed me his left knee when I asked what was hurting. . At this stage in his ability to communicate, I cannot tell if it is a joint issue or maybe the lactic acid build-up that burns his quads like Addie has. Hhhmmm. He is having much more fun outside here. At home he will go out for a few minutes, then come in to get milk and rest, screaming, "It HOT, I WANT MILK!!" And bless his heart, he goes back out a few minutes later only to return shortly, very frustrated and screaming for milk and about the heat. Addie seems to have blossomed here. She runs so freely, and just has that zest for the outdoors I can't see when it is so hot.

Today was in the upper 70s with cloud cover and a couple of light showers. The little showers were beautiful moving across the mountains and the valley. We had a fun time joining the local gym, The Wave, where there is are three indoor pools, one a kid pool with a walk-in pool, fountains, those buckets that dump water constantly, and a really nice water slide that Addie and Ainslee wore out!!! Garrett had a BLAST too, but preferred to be attached to me...a new thing for him. We planned to go see Toy Story 3, but then on the way out of the Wave, I noticed the truck we are borrowing from our generous hosts had a very low tire....with a visible nail in it. We then drove to two tire places before someone wanted to fix it, and then they took an hour to do it. Can't just pull and plug anymore, have to take tire off and patch, but it was free!! So we played Frogger across a 4-lane and ate at Pizza Hut and thoroughly enjoyed a leisurely visit to the Army Navy Surplus store....much less primitive, less true surplus than I have seen. The girls enjoyed trying on funky sandals, chukka boots, snow boots, ski hats and such, and we left with a canteen and carrying bag for Ainslee for a total of $6.00, $3 for each item. Yup, NO SALES TAX!!!!!! Gosh, I love this state!!!

Garrett sleeps soundly in a pack n play in the loft with me tonight. Ainslee is in her bunk downstairs curled up with a dog, Katara, a mix who looks like a black and red dachsund with long legs. Ainslee is so in love with her!! Addie has an 80 pound white greyhound, Lilly, curled up with/on her, and couldn't be happier!! Then there is the neighbor's 14 year old, precious black lab named Summit, curled up on the rug on the floor between the girls' bunks. Anyone who knows my kiddos and me knows this is a dreamy night for my girls to have their canine pals IN BED with them!!!

Hugs to each of you tonight, especially our family so far away and our fellow Grizzly-like moms fighting for their kids!!!!

Godspeed,
CL